from the VAULT
Multiple Sclerosis changed almost everything about how I live.
How I move.
How I work.
How much energy I have.
How much life I can fit into a day.
There was a time when I could work all day, come home, make art, go out, travel, fuck around, and assume there would always be more energy tomorrow.
That is not my life now.
Everything has a price.
A shower has a price.
Going out has a price.
Standing too long has a price.
Even the good moments sometimes come with a bill.
The difference between my old life and this one is night and day.
Before MS took over, I worked as an illustrator and graphic designer. Later, I worked in IT placement.
Different jobs. Different parts of my life.
But I always tried to approach things creatively.
That obviously made sense in art. You were supposed to look at something differently. Find another angle. Try to see what everyone else had missed.
But I brought that into the rest of my life too.
Work.
Business.
Problems around the house.
Anything I was trying to figure out.
I never really stopped thinking like an artist.
For years, I assumed I could always return to drawing.
Not necessarily as a career. Not necessarily to make money.
But I thought it would always be there.
Whenever I was ready, I could pick it back up.
Then MS affected my right hand.
Suddenly, the thing I thought would always be available to me was not so simple anymore.
That hurt in a way I still do not think I have completely worked through.
But the need to create did not disappear.
The tools changed.
The scale changed.
The pace definitely changed.
I built flower boxes.
Plant stands.
A workbench in my garage.
Small construction projects where I could still solve something, shape something and stand back when it was finished.
Then I made a graphic memoir using whatever tools allowed me to make it.
Now I am writing.
Or talking, really.
Talking through ideas, turning them around, trying to understand what is underneath them, and shaping them into something another person can read.
In some ways, MS has helped focus my creativity.
Not because MS is some gift. It is not.
But when your time, energy and tools become limited, you stop wandering quite as far.
You work with what is there.
You simplify.
And sometimes that makes the path toward what you are trying to say a little more straightforward.
Right now, I want to create around this wholly changed life.
I think it is important to talk about what happens when illness turns everything you knew about yourself upside down.
I think it is important to talk about having a big sick.
Not just the medical part.
The part where you are still trying to be a husband.
Still trying to be a father.
Still trying to participate in your own life when your body keeps changing the price.
I do not see enough honest discussion about what secondary progressive MS actually looks like from inside a life.
The grief.
The anger.
The ridiculous adaptations.
The dignity you are trying to protect.
The effort it takes to stay present.
I also think it is good for my family to see me doing this.
It gives me somewhere to put the harder parts.
It helps me examine what is happening instead of turtling inside it.
It keeps me from falling too deeply into the pain, the loss and the woe-is-me part of living with this disease.
Not because those feelings are not real.
They are.
But they cannot be the whole room.
My wife is still here.
My daughters are still here.
There are still things to build.
Things to experience.
Things to laugh about.
Things worth showing up for.
And this writing helps me show up.
It helps me make something from what happened.
It helps me stay curious about the life I still have.
For a long time, I thought MS had taken the artist away.
Maybe it only changed how he works.
The person who wants to create never left.
And right now, creating is one of the ways I keep showing up.